About Rosie
Rosie at home
Rosie is a beautiful, brave and extraordinary 7 year old girl. Her short life has already been an incredible story. If she could tell it to you she would, but she is still learning to comunicate because she is on the very severe end of the Autism Spectrum.
Rosie's autism is complicated by a severe, difficult to control and potentially dangerous type of epilepsy. Despite having to live with this condition, incredibly, Rosie still has an enormous capacity for fun love and laughter. This makes her one of the most remarkable people you could ever meet. As a result, her condition has changed our lives too - and we have ended up doing things we never imagined doing in our wildest dreams in a desperate attempt to raise the money she needed for some special therapy.
Rosie when she was a baby
Rosie was born on 29 June 2001, and seemed entirely normal. We had no idea of what lay ahead of us. As parents we thought our biggest decisions would be breast or bottle, disposable nappies or throw aways, the MMR debate and which school we would like to send her to. But by the time Rosie was 18 months she seemed different from other children her age. Mentally she was slipping behind her peers. She was more interested in looking at the pattern on the carpet than playing with her friends, but when we expressed concern to doctors and friends they all said "she's fine, she'll catch up." We felt a bit silly, but there was a nagging dread inside.
Despite being a little bit behind, she still managed to learn to feed herself with a spoon and could say a few words by her second birthday. Then something happened. Rosie began crying non-stop for up to six days straight, then like a light switch she would be fine again. She started regressing, all her skills were disappearing and she was slipping away from us. It was heart breaking.
Kara and Rosie
We were told she might have autism and we started a torrent of doctors and hospital appointments to try to figure out what was happening to our special daughter. The crying spells continued every three weeks, we were desperate and drained and exhausted. She no longer seemed to know about night and day, she seemed not to understand us, and could not play with her toys.
The doctors were worried about her hearing, so she was scheduled for a hearing test under general anaesthetic in February 2005. By then she had a diagnosis of autism. Half an hour after coming round from the anaesthetic Rosie had a huge epileptic fit. It happened again and again, and we were pushed out of the way as a team of doctors crowded around her, sticking needles in her and giving her drugs. We were sent home after two days, cursing ourselves that we had ever allowed them to do the hearing test, the results of which were normal. She seemed to have had a massive reaction to the anaesthetic, we hoped that would be the end of it but it wasn't.
After a week it started happening again, apparently brought on by a sickness bug. It just wouldn't stop, and between fits she would be out cold or unreachable, she couldn't even recognise her bottle. We thought we'd lost her. The doctors told us she was in 'non clinical status epilepticus' - a condition that can give you brain damage if it persists for more than half an hour. Rosie was in this state for two days.
After this we were in and out of hospital constantly. Rosie had regressed and would sit there grinding her teeth and wringing her hands. She was now at nursery school but it quickly became clear that she was making no progress at all. The trigger for her fits after the anaesthetic were the minor illnesses which are rife in schools. Every three weeks or so she would catch a bug and be hit by the fits. She would be unreachable for 6 days after such an episode. It seemed grossly unfair to put her in an environment that would potentially harm her, so we made a radical decision, we decided to take her out of school and home-educate her.
After speaking to various experts, several weeks of trawling the internet and reading as many books as we could find, we discovered the Growing Minds program in America.
We knew this route would be expensive, costing up to £17,000 per year in total, but it seemed to embrace all the teaching techniques that we felt might help Rosie, so we resolved to do it somehow. However, she was on the very severe end of the Autism Spectrum, so we couldn't be sure that she would respond. We had to give her a chance though, and knew we would have to pull out all the stops to raise the money she needed.
Read more about Rosie's progress...